최고 Living Rare 팟캐스트 (2024)

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Episode 116 | Xentria has a drug - XTMAB-16 that shows promise in fighting Sarcoidosis 1:09:47

2d ago1:09:47

1:09:47

XTMAB-16, a drug now in clinical trials has been developed by Xentria. In this episode of the FSR Sarc Fighter podcast, Noopur Singh, Vice President of marketing & Patient Affairs, and Tom Matthews, Vice President for Clinical Development join me to explain how XTMAB-16 works in the body as a "referee" to control our body's immune responses. Listen…

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Episode 115 | Sarc Fighter Andrea Maione has both sarcoidosis and long COVID. It's no party. 56:23

22d ago56:23

56:23

In Episode 115 of the Sarc Fighter Podcast, Andrea Maione fights to keep things going as she deals with the aftermath of the pandemic while dealing with the increasing onset of Sarcoidosis symptoms. Show Notes Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen…

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Episode 114 | Influencer Jonathan Carlin uses YouTube and other social media for an FSR Fundraiser 52:35

1M ago52:35

52:35

In Episode 114 of the FSR Sarc Fighter Podcast, a member of the Super Carlin Brothers shares how he is using his significant social media presence to raise money for the Foundation for Sarcoidosis Research. Yes, that's Carlin -- the same name as mine. In this case it's my oldest son Jonathan -- whose YouTube channel has more than 2-million subscrib…

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Episode 113 | Kinevant Sciences makes progress with its drug Namilumab 1:03:17

2M ago1:03:17

1:03:17

In Episode 113 of the FSR Sarc Fighter podcast, John is joined by Kinevant Sciences CEO Bill Gerhart and the Senior Director of Patient Advocacy Rayne Rodgers. The team at Kinevant is excited to share the news of the progress they are making with their drug, Namilumab as a potential new therapy for sarcoidosis patients. SHOW NOTES Kinevant Sciences…

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Episode 112 | aTyr is getting closer to a new drug to fight sarcoidosis. 52:21

2M ago52:21

52:21

Joining me today on the FSr Sarc Fighter Podcast is Sanjay Shukla, CEO of aTyr Pharma. Sanjay returns to the podcast with a promising update on Efzofitimod, the most promising candidate to become the first drug developed specifically to fight sarcoidosis. Sanjay joins the podcast from Brazil, just one of the countries around the world, where the dr…

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Episode 111 | Mathew Hall hits the wall with sarcoidosis. And it's Sarcoidosis Awareness Month! 1:03:20

3M ago1:03:20

1:03:20

Episode 111 is a special episode of the FSR Sarc Fighter podcast. It's sarcoidosis awareness month -- and the folks who are fighting for us at FSR want to get the word out. So Angela O'Malley and Cathi Davis join me for the show to talk about how they are working behind the scenes to get people to "Say Sarcoidosis." But also on the show is fellow s…

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Episode 110 | Walgreens is helping to fight Sarcoidosis 34:40

3M ago34:40

34:40

In this Episode of the Sarc Fighter podcast, we learn how Walgreens is making Sarcoidosis a priority for its customers. Not only is Walgreens doing a fundraiser for the Foundation for Sarcoidosis Research -- the chain is talking about the disease and spreading the word that sarcoidosis is out there, that patients need help, and that the disease nee…

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Episode 109 | Sarcoidosis has not been kind to Laura Runge-Gordon 1:33:09

4M ago1:33:09

1:33:09

In this episode of the FSr Sarc Fighter Podcast, Dr. Laura Runge-Gordon talks about how neurosarcoidosis crept into her life after years of misdiagnosis. She has seen every kind of complication you can imagine -- not to mention doing it all with a stressful job during the pandemic. Meanwhile, Royce Robertson returns with another ambitious fundraise…

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Episode 105 | Perry Montoya has traveled the world, but now he's on a new journey. 1:12:01

4M ago1:12:01

1:12:01

Perry Montoya is a travel writer and tour guide. He's led people through the holy sites around Jerusalem and understands the history of the Bible. Now he's learning to understand and cope with Sarcoidosis. Listen in as he details the demands of his disease including multiple organ involvement. Despite this setback, he remains optimistic and is look…

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Episode 107 | Mark Simbrowsky has a racing heart. Even when he's sitting still. 1:04:22

4M ago1:04:22

1:04:22

Mark Simbrowsky is a big-time runner. He runs marathons. But Sarcoidosis said, "Not so fast." Mark suffers from cardiac sarcoidosis. He went from being the fittest person in the room to a hospital bed, and nobody knew why. Now after a long journey, he is returning to his old form -- but it hasn't been easy. This episode of the Sarc Fighter Podcast …

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Episode 106 | Rachelle DeMaria just wants to launch her life 1:02:16

5M ago1:02:16

1:02:16

Rachelle DeMaria lives in Colorado Springs, where the scenery is beautiful and as they say, life is worth living. Rachelle had just finished cosmetology school and was getting ready to open her business. Then one day something in her back didn't feel right. After exhaustive testing doctors diagnosed her with Sarcoidosis. Her diagnosis came at the h…

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Episode 104 | John Martin thought it was time to get his affairs in order. 51:21

5M ago51:21

51:21

In episode 104 of the FSR Sarc Fighter Podcast, John Martin talks about how a routine trip to the doctor stopped him in his tracks. As is often the case is was a sarcoidosis related misdiagnosis. The good news is that he does not have cancer as his doctor suspected. On the other hand, sarcoidosis has dealt him a few setbacks and he must now live li…

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Episode 103 | Closure. Why we need it and why sarcoidosis won’t give it to us. 59:29

6M ago59:29

59:29

Happy New Year from the Sarc Fighter Podcast. To start the year off, I have a look at a psychological concept called the Zeigarnic effect. Don't worry about the big name, it will all make sense when you listen. But it has to do with how your brain discards information it no longer needs to free up room to process other thoughts. By doing this, it h…

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Episode 102a | Sherron Fantauzzi Is fighting the good fight. 1:07:11

6M ago1:07:11

1:07:11

Sherron Fantauzzi knew something was wrong with her body. After months of aligning the clues, doctors discovered it was sarcoidosis. In Episode 102 of the FSR Sarc fighter podcast, Sherron brings her upbeat personality to the mic and talks about how she has balanced a job with the FAA, a local talk show, being a basketball referee, and sarcoidosis.…

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Episode 102 | Sherron Fantauzzi Is fighting the good fight. 1:07:46

7M ago1:07:46

1:07:46

Sherron Fantauzzi knew something was wrong with her body. After months of aligning the clues, doctors discovered it was sarcoidosis. In Episode 102 of the FSR Sarc fighter podcast, Sherron brings her upbeat personality to the mic and talks about how she has balanced a job with the FAA, a local talk show, being a basketball referee, and sarcoidosis.…

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Episode 101 | Andy Lacher has sarcoidosis in his lungs and his heart. Put he’s pushing on. 48:43

7M ago48:43

48:43

Andy Lacher knew something wasn't right when his heart rate wasn't right on a bike ride with his wife. It was the beginning of a year of doctor's visits until the ultimate diagnosis of sarcoidosis. Show Notes: Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: ht…

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Episode 100 | John Mockovciak is a caregiver and philospher when it comes to Sarcoidosis 1:10:45

8M ago1:10:45

1:10:45

John Mockovciak spends a lot of time helping his wife, Janet travel her sarcoidosis journey. And for a couple who hike and ski and seek the lifestyle they've always wanted, it can be a lot of work for both of them. Yet somehow they get down the mountains in the snow, and to the iconic places so many people want to visit. But it takes a certain mind…

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Episode 99 | How to meet NY Yankees great Bernie Williams, and FSR’s Manny Lozano on the power of the sarcoidosis community 1:10:46

8M ago1:10:46

1:10:46

In Episode 99 of the FSR Sarc Fighter podcast, we learn Yankees great Bernie Williams is using his remarkable talent as a musician to help people with Sarcoidosis. We also meet Manny Lozano who is in charge of building the sarcoidosis community through FSR. Manny spent more than 20 years in the Navy including some heavy duty tours. Now he brings th…

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Episode 98 | Dr. Nancy Lin is looking deep in our cells to find a way to diagnose Sarcoidosis 59:09

9M ago59:09

59:09

Dr. Nancy Lin at Johns Hopkins is working on a way to quickly diagnose Sarcoidosis - at last compared to the current ways it is being done. She is looking at our micro RNA to see if there is something different in sarcoidosis patients. Her research is being funded by a $150,000 grant from the Foundation for Sarcoidosis Research. Not only does it ap…

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Episode 97 | Joel Rosen is fighting sarcoidosis and fighting for you at the same time. 44:13

9M ago44:13

44:13

Attorney Joel Rosen woke up one day and he wasn't feeling well. He thought maybe it was a cold. But he just couldn't get to feeling better. That sent him through a series of tests that eventually led to a diagnosis of sarcoidosis. As an attorney, he had already generously loaned his talents to several non-profits. And now we can add the Foundation …

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Episode 96 | How effective is methotrexate? And Royce braves the miles and the weather for your cause! 38:34

10M ago38:34

38:34

In Episode 96 of the FSR Sarc Fighter Podcast, fellow Sarc Fighter Royce Robertson returns to talk about his epic adventure while raising money for the cause. Meanwhile a small study in Japan suggests methotrexate may not be the answer for some Cardiac Sarcoidosis patients. Show Notes www.kinevant.com www.sarcoidosistrial.com Click here for informa…

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Episode 95 | FSR awards Dr. Christen Vagts $150,000 for critical research, and John puts his sarcoidosis in perspective. 41:21

10M ago41:21

41:21

Show Notes More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Episode 77 interview with Dr. Christen Vagts https://beatsarc.podbean.com/e/episode-77-covid-vaccines-…

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Episode 94 | Tony Haskel returns to the podcast after a rough few months. And do pulmonary Sarc patients get a fair shake at transplant time? 55:23

11M ago55:23

55:23

Tony Haskel first appeared on the podcast in March of 2023 - about five months prior to this recording. At the time he knew he had sarcoidosis, but he didn't really know what was in store. Now, months later he is much better acquainted with sarc, but still has an optimistic outlook. Show Notes www.kinevant.com www.sarcoidosistrial.com Click here fo…

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Episode 93 | John tests his Sarcoidosis on assignemt on the U.S.- Mexico border with the National Guard. 43:37

11M ago43:37

43:37

In this episode of the FSR Sarc Fighter Podcast, I tested my health as I was embedded with the National Guard, patrolling the U.S. - Mexico border at Eagle Pass, Texas. Temperatures soared up to 103 degrees, as I worked to report on the battle between migrants wanting to cross into the United States, and authorities who want them to come through le…

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Episode 92 | Researcher Dr. Stephen Tilley on where we got sarcoidosis 55:57

12M ago55:57

55:57

Dr. Stephen Tilley is an Associate Professor of Medicine at the University of North Carolina. He specializes in lung disease with a concentrated effort on sarcoidosis. He is researching new methods and tools to combat the disease, by looking at the response our bodies create to different pathogens -- which could lead to a greater understanding of t…

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The Importance of Diverse Representation in Clinical Trials 1:08:24

12M ago1:08:24

1:08:24

On this episode, I will be speaking with Erica Courtenay-Mann, an advocate for patients with Sarcoidosis. She gives talks regarding what it's like to live with chronic illnesses & she is involved in the Women of Color Committee and the ACTe Now! Patient Committee. She is a strong voice to raise awareness about the importance of clinical trials, esp…

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Episode 91| Promise from a new drug - and diagnosing neurosarcoidosis is hard. 40:49

12M ago40:49

40:49

In Episode 91 of the FSR Sarc Fighter podcast, John shares two reports about developments in the treatment of sarcoidosis. He looks at recent studies published in Sarcoidosis News that show promise for aTyr Pharma's efzofitimod, currently in clinical trials, and also a report from Sweden that shows the difficulty in diagnosing neurosarcoidosis with…

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Episode 90 | Mathew Campbell ’s Sarc went from his lungs to his heart. And FSR Crystal Gala highlights 1:11:59

1y ago1:11:59

1:11:59

Matthew Campbell was trying to come back from a couple years of being out of shape, but his body seemed off somehow. His normal pep on the basketball court just wasn't there. What WAS there was sarcoidosis. Listen in as Matthew shares the story of how he gradually realized he was fighting way more than his fitness. Show notes: More on aTyr Pharma: …

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Episode 89 | What does your DNA have to do with Sarcoidosis? An FSR Town Hall. 1:13:22

1y ago1:13:22

1:13:22

We don't know what causes Sarcoidosis, but we are getting closer and closer. A part of that research is coming from genetic experts at 23andMe. The genetics company has worked with thousands of people to study their DNA -- and to drill down to see if there is a connection between our genes and whether we get Sarcoidosis. Their findings were present…

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Episode 88 | MaryKay Reidenbach has been fighting the fight for 28 years. 46:31

1y ago46:31

46:31

Sarc Fighter MaryKay Reidenbach has been fighting sarcoidosis for close to three decades. It's invaded so many parts of her body, it's hard to figure out where it's the worst. But she keeps plugging along, trying to live her best life, and largely doing so. Hear her story in this episode of the FSR Sarc Fighter Podcast. www.kinevant.com www.sarcoid…

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Episode 87 | Writer Rebeccca Stanfel on the Pain from Sarcoidosis and Legitimate Need for Opioids. 54:30

1y ago54:30

54:30

Rebecca Stanfel is a Sarc Fighter who also happens to be a wonderful writer -- to the point that national publications share her work. She recently published a blog in the Huffington Post, where she talked about the pain from Sarcoidosis that was so bad, only opioids would give her relief. In a world where we now often shudder at the mention of the…

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Episode 86 | Betsy Bennett beat breast cancer - but Sarcoidosis arrived shortly after. 1:20:39

1y ago1:20:39

1:20:39

Betsy Bennett is fighting Sarcoidosis. That might seem easy after breast cancer led to a double mastectomy. But now the fatigue and ongoing battle with Sarc are taking a big toll on her quality of life. Listen in as she shares the story of how she thought she was disease free for just a brief time. Show Notes www.kinevant.com www.sarcoidosistrial.c…

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Episode 85 | An FSR Town Hall - Getting closer to the first ever drug designed to fight Sarcoidosis 1:23:45

1y ago1:23:45

1:23:45

This podcast is a recording of the amazing town hall discussion looking at aTyr Pharma's drug that shows great promise as a replacement for prednisone for pulmonary sarcoidosis patients. In this discussion, we will hear from aTyr CEO Dr. Sanjay Shukla, FSR CEO Mary McGowan, Patient Jim Kuhn, and Dr. Shambhu Aryal - the Medical Director of the Inova…

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Episode 84 | A patient story to go along with Sarcoidosis Awareness month and how FSR is leading the fight. 55:48

1y ago55:48

55:48

April is Sarcoidosis Awareness month and FSR has many ways that the community can participate -- with your photos, videos and even holding up signs. It's all part of making the world aware that Sarcoidosis is a problem -- and remember the squeaky wheel gets the grease. Well it's time to squeak! Joining me on the FSR Sarc Fighter podcast this week a…

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Episode 83 | Tony Haskel thought his heart was healthy. Then came Sarcoidosis. 46:13

1y ago46:13

46:13

Tony Haskel is an active person. From his home in Connecticut, he makes time to ski in Vermont and ride his bike in the hilly regions around his home. But one day he found he couldn't go. His heart wasn't functioning properly because sarcoidosis had found its way into his body and started blocking vital communications within his heart itself. In th…

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Episode 82 | Sam Wassel’s unexplained abdominal pain was sarcoidosis - plus Cycle4Sarc goes public 58:25

1+ y ago58:25

58:25

Sam Wassel is a young wife and mother. She is also a long distance runner. But the hardest thing she's encountered recently is the pain in her abdomen. At first she thought it was a severe issue with her monthly cycle. But upon further review, it was sarcoidosis. Listen as she details the pain she experienced and the difficult path to diagnosis. Al…

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Bonus Episode | FSR Town Hall - Uncovering the Future of Sarcoidosis Treatment and Clinical Trials 1:13:24

1+ y ago1:13:24

1:13:24

This is a special bonus episode of the FSR Sarc Fighter podcast. You will be listening to a town hall recorded on February 18, 2023, where the guests discuss how to get more people involved in clinical trials for medications pointed at treating sarcoidosis patients. Guests include Mary McGowan CEO of the Foundation for Sarcoidosis Research, Dr. Div…

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Episode 81 | Wade Tomlinson tries to walk away from sarcoidosis. 52:49

1+ y ago52:49

52:49

Wade Tomlinson is a relatively young 49 years old - and he's already been suffering from sarcoidosis for nine years. Despite his reduced ability to breathe, he hits the trails every day, where he tried to log 15,000 steps. Sometimes even more. In Episode 81 he tells john how sarcoidosis crept up on him, somewhat disguised as allergies. Show Notes: …

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Episode 80 | John riffs on sarcoidosis clinical trial opportunities and ... Disney 31:08

1+ y ago31:08

31:08

In Episode 80 of the Sarc Fighter podcast, we take it too sarcoidosis in two ways -- by learning how to join an important clinical trial and by living the fullest life we can despite the challenges sarcoidosis presents. Show Notes Kinevant Clinical Trial https://bit.ly/3DaVsR6 More about Kinevant: https://kinevant.com/about-us/ Help FSR further its…

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Episode 79a | Royce Robertson is Fighting Sarcoidosis from the seat of his bike! 1:18:49

1+ y ago1:18:49

1:18:49

Royce Robertson is battling sarcoidosis, and he has a plan to do a cool, two-wheeled fundraiser. Royce has been dealing with sarcoidosis for years. In fact he was one of the first people I ever "met" who also had sarc. He reached out to me after I published a blog abut trying to ride my bike, while medications like Cytoxan and prednisone made it al…

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Episode 79 | Sarc Fighter Royce Robertson bares his sole while looking for a way to help fight Sarcoidosis 1:18:49

1+ y ago1:18:49

1:18:49

Royce Robertson has been through the wringer with sarcoidosis. It's impacted his heart in ways that impact every other aspect of his life. And yet he is scheming for a way to help all of us fight the disease by doing something he loves -- even though sarcoidosis is trying to stand in the way. Show Notes: More on aTyr Pharma: https://atyrpharma.com/…

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Episode 78 | Dr. John Belperio at UCLA has done a deep dive into the state of Sarcoidosis. 54:59

1+ y ago54:59

54:59

Dr. John Belperio has been looking at dozens of studies on sarcoidosis, drilling down and figuring out exactly where medical science is with respect to pulmonary sarc. How often is it fatal? What are the best treatments? What can we say about the way sarcoidosis attacks the body? He's published his review in JAMA, the Journal of the American Medica…

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Episode 77 | Covid Vaccines and Sarcoidosis: Surprising new research from the University of Illinois Chicago 41:53

1+ y ago41:53

41:53

Doctors Christian Ascoli and Christen Vagts have done some of the most in-depth research yet when in comes to Sarcoidosis and Covid-19 vaccines. Do they protect Sarc Fighters from the virus? It's a good question, since there is strong evidence to suggest that vaccines against some other diseases are only marginally effective or not effective at all…

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Episode 76 | Leeanne West is a scientist who discovered Sarcoidosis in her own life. 52:14

1+ y ago52:14

52:14

Leanne West felt a bump behind her ear. It was the beginning of her journey with Sarcoidosis that has lasted for over a decade and lingers to this day. In this episode of the FSR Sarc Fighter Podcast, Leeanne, who has an amazing career as a researcher at Georgia Tech, talks about how Sarcoidosis has spread throughout her body, and how she keeps it …

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Episode 75 | FSR Leaders Dr. Louise Perkins and CEO Mary McGowan on all the current progress. 1:12:18

1+ y ago1:12:18

1:12:18

FSR Board chair Dr. Louise Perkins and CEO Mary McGowan say we are closer than ever to major breakthroughs in the treatment of Sarcoidosis. In Episode 75 of the FSR Sarc Fighter Podcast, they join me to talk about all the progress that is being made on may fronts -- and how we can all participate in keeping the momentum going. Show Notes: Kinevant …

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Cerebral Cavernous Malformations & The Breaking Barriers Initiative - Interview with Dr. Vegas Brown 57:01

1+ y ago57:01

57:01

In this episode, I will be talking to Dr. Vegas Brown about Cerebral Cavernous Malformations and the Breaking Barriers for Black Health Empowerment initiative to help address the disparities that still plague the Healthcare System, especially for black Americans that have a rare disease. Photo Credit - Integra LifeSciences Angioma Alliance - https:…

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Episode 74 | A Doctor and Two Sarc Fighters Urge Black Americans to Join Clinical Trials 1:04:28

1+ y ago1:04:28

1:04:28

In Episode 74 of the Sarc Fighter Podcast we take a deep dive into the reality that Sarcoidosis in more prevalent in people of color, but they are less likely to participate in clinical trials. That's a problem for medical professionals who are trying to help solve the sarcoidosis riddle, to find more effective treatments and help more people. Why …

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Sarcoidosis: Disparities in Healthcare & the Importance of Diversity in Clinical Trials 1:09:22

1+ y ago1:09:22

1:09:22

Photo Credit - pulmonaryhypertensionnews.com In this episode, I will be interviewing Dr. Divya Patel. She works closely with Sarcoidosis patients and the work that she and so many other doctors do is important for recognition of this terrible disease. I have seen this disease first-hand. Ten years ago, my sister died from complications from one of …

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Episode 73 | FSR is looking for a few good volunteers. Maybe you. 59:44

1+ y ago59:44

59:44

The Foundation for Sarcoidosis Research is looking for people who want to help in the fight. In 2022 FSR announced the Global Sarcoidosis Clinic Alliance - a member program of clinics, hospitals, and individual providers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. These providers,…

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Episode 72 | Sarc Fighter Regina Gordon shares her battle. 49:04

1+ y ago49:04

49:04

In Episode 72 of the Sarc Fighter podcast, Regina Gordon, an FSR Advocate shares the story of how sarcoidosis has curtailed her life for decades. She bravely shares how the disease has spread from her lungs to her skin and lymph nodes and other parts of her body. But she is not willing to give up. She's improved her outlook and even earned two coll…

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